I’m so tired. I feel beaten down by my own personal beast. The beast whose only creed is to slowly rip away all the things I loved so much about myself. What am I suppose to do? I feel constantly whipped personally and physically. Hope seems to keep me lodged in the past. That is, perpetually longing for abilities and a lifestyle I once had. I still anticipate things getting better, but that seems to habitually set me up for a big let down.

In case you haven’t noticed today is not a good day. I’m weak. I’m tired. I’m fuzzy in the head. And I can’t wait for this to pass.

I originally decided against posting anytime I experience indifference. I usually like to leave you with an optimistic message. But tonight I just can’t muster up the strength for even that. My husband, Tommy, suggested I just write what I feel. He said, “Life is not always bliss. Since your posts reflect your life you must talk about the good and the bad.” So I would like to welcome my family and friends to my “cave of pity”. I usually only invite a select few but now I’m opening it up to everyone, warts and all.

I’m lamenting the way I use to be, the way society use to receive me. It often made me proud. Which in itself is a self-absorbent state. I dropped the ball there too! I’m tired of relying on a wheelchair. When in fact I need power transportation. That’s on it’s way too, a scooter thing.

I don’t usually whine, but I miss being a relevant part of society. I feel like I’m trapped in a cage and it’s getting smaller and stinkier. For a long time I thought driving would bring me back some normality, but when it came right down to it I couldn’t make the cut. As a matter of fact, I was too frightened to get behind the wheel with the instructor! Honestly I’ve been feeling this way for a while…just secretly. I find things are easier for all parties involved, if I put forth my best effort and just fake the rest.

Hurricane Irene hit the eastern seaboard. I need to be thankful I don’t live in Maryland anymore and send prayers to those I know and love there.

Well tomorrow I get to see my nurse practitioner. We graduated nursing school together! Isn’t that neat? I’m happy for him.

Hi Nicole, thank you for visiting my blog. Your blog is absolutely beautiful! You have a really eloquent voice, and made me think about what other people go through on a daily basis. I’m following you now.

Hang in there girl.
Fifteen years into my dx and I often feel the same. Drifting further from life and my family. The dark thoughts tend to swell, wave after wave, taking you under.
But you must tread the water (I doggie-paddle as I suck as a swimmer!).
It is a constant tug of war on your sanity.
I never thought this part of MS would come…but it is actually a worse feeling than the spasticity & fatigue that one associates with the disease.
Just remember, you are not alone. Maybe together we can all keep our heads above the surface (I’m wearing water wings as I type this response!).
Thank you for your honesty.
-My Odd Sock

So glad if spouse told u to let it all out because u basically typed everything I’m feeling minus the wheelchair. I finalizes my retirement and I’m still in shock that at age 40 I am no longer able to work. Vent all u need we will support u

Dear Nicole, Your words spoke to me as I read them today. I was once in the MS cave of pity and I stayed there for a year. I could not seem to find a way beyond the darkness. Numb body, weakness, balance issues, vision blurred, tightness of chest, muscle spasms, mental confusion, depression, all seemed to drag me down deeper than I ever thought possible. It was a year I never hope to relive, but your words brought a flood of memories back into my heart and soul. At the time, I needed medication to get out of the depression I was feeling. I needed the comfort of the meds so I could let my mind and body heal. I have become mentally strong again, and that is where the true power lies. Thank you for posting the fears that most of us with MS have gone through, as we tried to piece our lives back together. You help others know that these thoughts are shared by many, and it is alright to grieve for a time. I no longer miss the old me, but my MS has turned out to be very stable right now, so I am one of the lucky ones. Know that you are in my thoughts and in my hearts, and I appreciate your courage in sharing the fears of MS. -Lori

Lori,
I am sorry I missed your comment. It’s so nice to know my words ring true for so many. It seems I have found my audience!
Man,you were in the cave for a year! That’s a long time. What was the thing that finally pulled you out?
Nicole

Hi Nicole, Yes, a year was a long time to be in the cave. I had such a hard time dealing with the diagnosis and the label. Then, through my weakness, I started training to climb a mountain. Almost a year to the day after I woke up with the numbness in my body, I climbed the highest peak in South America. I decided if I was strong enough to climb a mountain, I was strong enough to face my MS, without the fear and shame that I had felt before. I kept climbing mountains, and funny, but I got stronger instead of weaker over the past 12 years. I am now 55 and still climbing. It took running away from my life, to find it again. You are a powerful writer and I thank you for sharing your experience, because you are not alone. All my best to you as you face your MS. ~Lori

Nicole,
I also can no longer drive because of MS. I have my drivers license, still, but can’t stand the thought of surrendering it. I’m smart enough to not put anyone in danger but I hold on to the hope of maybe, what if, I hope I’ll be able to safely drive again. That little piece of plastic holds a lot of power for me. Strange, I know. I’ve had to give up so much! I’m not ready for anything else right now!!! Julie

Nicole,
Reading your blog is inspirational to me. I also use a walker around my home, but cannot “do the distance” when it comes to shopping and anything that requires long distance walking. It’s the wheelchair for me. It saddened me for a while. Also humiliated me. The idea of someone seeing me like this completely horrified me. I have good days and bad days. I’m glad that you are here so we hopefully can be some kind of support for each other. Praying for a cure. Julie

(((( Nicole ))) I come to you via FB-I have read about your site and it has helped me understand more about MS… along with msworld. My man has recently been rx’d with MS – he is also a 25 yr Type 1 diabetic ……

Battling with the depression that goes with chronic illness is a very hard part of the disease(s)…

I hope you can poke your head out of the cave tomorrow- thank you for being brave enough to share 🙂

Hi Nicole, just saw your blog for the first time. I love it!! Today I am feeling the same way. My brain is jumbled and my left leg isnt functioning. I just want to cry. My husbands response…I should be used to it by now being I have had MS for almost 9 years. Im sorry I never get used to it. I feel like I am so left out and a burden…UGH!! I am gonna keep reading though. You are very wise!!!
Jen

Jen, thanks for stopping by and I release new stories on Tuesdays. You should be use to it by now …..the hardiest words too
words to stomach. But I often excuse them by saying the old quote ,”if they knew better they would do better” In this case of course speak better”
Nicole 🙂

Nicole, thanks for sharing even the not-so-great moments (and thanks to your hubby for encouraging you to do so!). I was chillin’ in my cave of pity this weekend for other reasons. I think we all have to go there from time to time and just admit that we’re frustrated, discouraged, exhausted, and just fed up. It’s okay as long as we realize that the cave is a place we pass through occasionally, not a place to set up permanent residence. God bless and keep blogging, my friend. By sharing your experience, you are helping and encouraging others more than you know.

Nicole, this was a great post. It is a reminder that we cant and are not always upbeat. It is a constant battle and we do get tired. I am just glad that we have each other to complain to and listen… we all share much of this same feelings so please don’t feel bad about saying what is on your mind. If we don’t we would go crazy!!! LOL Hang in there we are here for you and we know you are here for us too. Thanks for doing this blog.

I love you NiNi and yes, Tommy was right, everyday is not bliss. Most of us don’t have the balls or the courage to expose ourselves and be as vulnerable as you just did!!! You are still an inspiration and you’ve just displayed so much grace!! So happy to know you then and now and even happier to call you a friend!!

Your husband is 100% right. And, though I too try to minimize the posts I publish when I am down and out, I am a firm believer in being real about this stupid disease. I think it is a disservice to think one can always remain chipper and upbeat. Tomorrow’s poem on my blog deals with precisely this issue. In the meantime, I’ll copy something that is on my right hand column:

“How I Get Through This
There are times when I look up and say, how did this happen to me? Asking why usually doesn’t get me anywhere, except depression. My present reality really does not allow me to indulge in such questions. I have to cope instead with adjusting to my currently diminished physical capacity and the appalling possibility, nay, probability that this can get much, much worse. How do I then maintain my spirit? Who is the Me who remains when so much of what defined me has been stripped away? Can I transmute this reality into something with meaning and value? Sometimes I find little victories that sustain me. Sometimes I find someone like Holocaust survivor Viktor Frankl to help me navigate these questions. At other times I feel that I am in a boat without a paddle in a raging sea. Mostly I am a work in progress living an unexpected life where most of the rules I thought applied don’t and I am left to rely on whatever inner strength, character, and personal faith I can call on to get me through.”

And, sometimes, Nicole, that inner strength, character, and personal faith just aren’t enough. Don’t beat up on yourself. This is no small thing you dealing with.

As long as you tell the truth, which you do, I like to read your blog. The truth may change from day to day so I’m happy to read about your current truth. happy, sad, indifferent, or blah, I’ve also felt them all.

With MS we aren’t best friends but we might just listen like we are. I care what you have to say.

I know how you feel and have been sitting in my cave as well. I feel such sadness and anger over my lost life lately. It has ripped a hole in our financial security and our stability as a family. My heart is struggling as my body does and my eyes are stinging from crying too much as of late.

Thank you for this post. I could not muster the strength to post my feelings on my own blog and needed someone to bring out the pain I feel too.

Gothic Rosie,
I’m not completely out of the cave yet. Its a mucky place to be. I feel like I’m going to my own funeral. In a way I certainly am. But deep down I feel like MS wins if I stay here too long.

Nicole, great post…feel for u…went from driving last year to not and now use power chair.. life happens still even as the MonSter sux ours…I’m still trying to wrap my brain around the sudden loss of freedoms..godspeed